Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 > Did anybody get to see " refrigerator Mo1thers " on PBS? I have been out of town and pooped. I forgot all about it. I could kick myself. > How was it??? > Sissi > > Sissi, It was great! Very informative about the outdated treatment of parents of autistic kidsby professionals. Spoke to 7 parents (mostly mothers) who raised children in the 50's, 60's and early 70's when autism was considered a psychosis caused by parental neglect. It was on a PBS show called Point of View (POV) and I'll bet they rerun it. I didn't tape it as our local PBS station here chose not to run it and I had to watch it on the black and white tv in the garage that isn't hooked to the satellite dish. It was blurry and sound was bad...I'd recommend it if you have another chance to see it. Good recommendation, Penny. Leggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 > > How can saying I love my child unconditionally damage > > anyone??? > Because you're causing them to know how selfish they are that they can't > love their children the same way. > > JMHO > > Jacquie I think they see my acceptance (which didn't come easy, mind you) is " giving up " and that they (the supermoms -- and dads) think they're superior parents (to lazy me who really doesn't deserve a brilliant child) because they will *never* give up trying to cure their kids of autism. I no longer believe there is a cure for autism. That doesn't mean I would refuse it if one suddenly appeared tomorrow. But I'm not going to bang my head against the wall every day trying to " train " him to be normal. I will do my best to make sure he can survive in this world and hopefully have a happy life. He's not normal. I don't think he'll ever be normal. I can handle that now. Am I a lazy or bad parent because I feel that way? Some people seem to think so. My least favorite person on that list never fails to mention that most autistic kids aren't like Boone. I guess that's probably true. But I think there are more kids who are a little bit like him than not. I believe all autistic kids have some amazing aspects to their personalities. I'm talking about the hard-core cure types here. The ones who think obsessions should be avoided at all costs. IMO, all creativity is borne of obsession. Without obsessions, I think we'd still be writing on cave walls. Sissi Kids' Page http://www.isoa.net/~nitetrax/dillon.htm Boone's Art http://www.isoa.net/~nitetrax/bart.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 In a message dated 7/16/2002 11:06:39 PM Eastern Daylight Time, nitetrax@... writes: > Did anybody get to see " refrigerator Mo1thers " on PBS? I have been out of > I fell asleep on the sofa about halfway threw... I thought it was very depressing and not a good representation of autistic children. If possible I find myself even more depressed than I was before I saw it. I am honestly thinking about making a documentary of my own. I know that we are lucky that drs are no longer blaming us but everyone else does anyway. G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 I saw it and parts made me cry! I am so lucky, as most of us are, that we are in the current frame of time. The show made me very much more grateful than ever to all the mothers who came before me. Hopefully it will air again and more of us will get a chance to see it, it really helped see how much easier we do have it. Tommi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 > Did anybody get to see " refrigerator Mo1thers " on PBS? I have been out of town and pooped. I forgot all about it. I could kick myself. > How was it??? > Sissi, I saw it, and I thought it was worth seeing...I felt so much for those moms who lived during the " it's your fault " era...I guess I hadn't realized that the protocol then was to put the MOM in therapy (she was the problem, after all) and take the kids away. One mom said that when she placed her child, they wouldn't even let her go see where he slept...wouldn't tell her what he did all day...told her that the point of placing him was to help him separate from his past and make a " new life " ...they even had a little " mother " figure that the kids were encouraged to kick, step on, etc. It's truly wretched what happened to these mothers. But honestly, what struck me was the adults with autism they showed... will probably look like that when he is older, and that was very sobering. And there is one part I can't get out of my mind...a mother who showed Santa photos of her son over the years from about 2 to 7...you could see in his face his retreat. It reminds me so much of looking at pictures of for the same period. She said, " I had this little boy, and I lost him, and I'm still trying to find him. I'll never stop trying. " She had tears in her eyes...and she must have been in her 60s. I guess the pain just never goes away...that part was hard. I did tape it, but I have absolutely no idea how to copy it...we only have one VCR that is dependable for recording. Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 I wanted to let you all know of some programs that will be on the discovery health channel(if you have cable). 7-21--6:30 am-pulse(program about autism and learning delays) 7-21--11am-invisible wall:autism 7-30--2 pm-Barbara and sheldons story:living with autism madness4midnight@... wrote: I saw it and parts made me cry! I am so lucky, as most of us are, that we are in the current frame of time. The show made me very much more grateful than ever to all the mothers who came before me. Hopefully it will air again and more of us will get a chance to see it, it really helped see how much easier we do have it. Tommi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 - Just the opposite actually. It was a VERY good representation of Autistic children who get pulled from their parents (read:mother), because society thought mom was responsible. Penny Re: Did anybody see it? In a message dated 7/16/2002 11:06:39 PM Eastern Daylight Time, nitetrax@... writes: > Did anybody get to see " refrigerator Mo1thers " on PBS? I have been out of > I fell asleep on the sofa about halfway threw... I thought it was very depressing and not a good representation of autistic children. If possible I find myself even more depressed than I was before I saw it. I am honestly thinking about making a documentary of my own. I know that we are lucky that drs are no longer blaming us but everyone else does anyway. G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Very good... I thought it was pretty well done!! " Don't judge each day by the harvest you reap but by the seeds that you plant. " - Louis son , mom to: , ASD, ADHD, OCD, GAD, 4 , NT, 2 Did anybody see it? Did anybody get to see " refrigerator Mo1thers " on PBS? I have been out of town and pooped. I forgot all about it. I could kick myself. How was it??? Sissi Kids' Page http://www.isoa.net/~nitetrax/dillon.htm Boone's Art http://www.isoa.net/~nitetrax/bart.htm " People that are really very weird can get into sensitive positions and have a tremendous impact on history. " - - - Dan Quayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Thanks for this ! Penny Re: Did anybody see it? I wanted to let you all know of some programs that will be on the discovery health channel(if you have cable). 7-21--6:30 am-pulse(program about autism and learning delays) 7-21--11am-invisible wall:autism 7-30--2 pm-Barbara and sheldons story:living with autism Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 I really liked the show. It was difficult to watch, but well done, I thought. I was sad for the kids (now adults) because of the help that they missed out on. I think some of them would have been a lot more independent if they had gotten proper help. I felt badly for the mothers because of the guilt they carried around. I remember how horrid I felt before Kep's dx. I was questioning my parenting skills and feeling completely incompetent. If some doctor had come along and said, " Yes, you're the problem " I probably would have committed suicide. I was amazed by the strength of those women, to go on, and to eventually fight for their kids. It truly made me thankful. Amy H--in Michigan Kepler 4 1/2 ASD and Bethany 6 NT _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 >From: nitetrax@... How can saying I love my child unconditionally damage >anyone??? They are all a bunch of idiots Sissi. Boone is incredibly lucky to have you! Amy H--in Michigan Kepler 4 1/2 ASD and Bethany 6 NT _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 -did he really kill himself? or am i just being hopeful? Jacquie h -- In parenting_autism@y..., nitetrax@i... wrote: > . One mom > > said that when she placed her child, they wouldn't even let her go > > see where he slept...wouldn't tell her what he did all day...told her > > that the point of placing him was to help him separate from his past > > and make a " new life " ...they even had a little " mother " figure that > > the kids were encouraged to kick, step on, etc. > > Those doctors were the ones who were sick. I'm glad Bettleheim killed > himself. Too bad he didn't do it before ruining all those lives. > > Sissi > > Kids' Page > http://www.isoa.net/~nitetrax/dillon.htm > > Boone's Art > http://www.isoa.net/~nitetrax/bart.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 In a message dated 7/20/02 11:25:40 PM Pacific Daylight Time, nitetrax@... writes: << IMO, all creativity is borne of obsession. Without obsessions, I think we'd still be writing on cave walls. >> Yeah!!! (standing ovation over here!) kandie Kandie and (9 years) * 's website: <A HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A> * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Sissi, I haven't seen an original to this post, but I think it's wonderful you're able to 'accept' Boone as he is. You and he would be miserable if you couldn't. I don't look at that as being lazy either, or as not wanting him to be 'normal'. I think we all know that our kids won't be normal, we just want them to fit in as much as possible as adults and to be happy with who they are. If you were to take away Boone's stims (I'm assuming we're talking his art and clocks here), you'd probably both be miserable and he wouldn't be able to show how amazing he really is! We all need to be able to relax and enjoy our children. Sue ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Yep. The line in the movie that everyone gasped to: (and I'm paraphrasing) " Autistic children feel about their mothers the way the Nazi's felt about the Jews " Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 > The line in the movie that everyone gasped to: (and I'm paraphrasing) > > " Autistic children feel about their mothers the way the Nazi's felt about > the Jews " > > Penny He's dead, he's dead, he's dead, la la la, hope he's burning in hell, la la la la la!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 > I'm talking about the hard-core cure types here. The ones who think > obsessions should be avoided at all costs. > Obsessions, or stims? IMO, stims should be avoided at all costs, but obsessions? Without his obsession, aspie Glenn Gould would not have had the life of art he had, and the world would have missed out on an incredible artist. That doesn't seem right. has no obsessions, but if he did, I don't think I'd be trying to crush them the way that I discourage stims! Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 > > > I was flamed mercilessly for saying that Boone is wonderfully autistic. He > > is, but it sure pisses them off to hear it. One of them told me I was > giving > > false hope to parents of newly diagnosed children and that was dangerous > and > > irresponsible. Um, you're speaking the truth and it is irresponsible? Gee...I feel very much that Putter is " wonderfully autistic " (love that phrase, Sissi). I joined the Me-List first and I quickly saw that there was a huge range of kids with autism. At the time, I had no idea what Putter would be like; I was SO envious of parents who actually had words from their children and now I am aware that some of what I write may make some listmates feel the same way that I used to feel. But I didn't want those people with bright autistic kids to stop writing! They gave me hope. I constantly tried to remember that Putter's outcome might not be good and that he might not ever talk, but I loved the hopeful tales and I rejoiced (while envying; it is possible) in hearing about their progress. How can saying I love my child unconditionally damage > > anyone??? > I found on the Me-List and some of the other ABA lists that some of the parents seemed to hate autism in a way that I don't really. I mean, I hate many aspects of autism. The stares of the ignorant, the frustrating times, the obsessions that are stronger than anything I can fight effectively. But I like people with autism. I like their honesty. I like their odd intelligence. I like their unusual point of view. I think they are fun. I married a spectrum person (THAT I do not recommend) and I have two spectrum kids. And I think some people are bothered by any acceptance of autism. They want it eradicated. Maurice writes about her daughter that she will drag her kicking and screaming out of autism (can't remember the exact quote, but that is the gist of it) and I don't feel that way, really. I want my children to be happy, self-supporting, and to be able to use their talents. They are welcome to be autistic if they can manage happiness and independence. Their talents are autistic talents, on the whole, so for all I know the less autistic they got, the less talented they would be. He, he. Yesterday, I was driving home with Enrique in the car and I said something about Putter having nothing wrong with him intellectually except autism. " What's wrong with autism? " Enrique asked me, a touch indignantly. Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 > Um, you're speaking the truth and it is irresponsible? Gee...I feel very > much that Putter is " wonderfully autistic " (love that phrase, Sissi). This puts me in mind of that wonderful Thanksgiving post you wrote in which you called Putter 'Perfectly Autistic'. I loved that. :-) > I joined the Me-List first and I quickly saw that there was a huge range of > kids with autism. At the time, I had no idea what Putter would be like; I > was SO envious of parents who actually had words from their children and now > I am aware that some of what I write may make some listmates feel the same > way that I used to feel. I fear that, too. That by reporting 's verbal accomplishments I may be 'rubbing it in'. > I found on the Me-List and some of the other ABA lists that some of the > parents seemed to hate autism in a way that I don't really. That's what I found when I first started looking at the net, too. Everyone seemed so determined to 'fight' and 'cure' and noone seemed to just live every day. I wanted to just live like a family, not spend my life being angry. > > I mean, I hate many aspects of autism. The stares of the ignorant, the > frustrating times, the obsessions that are stronger than anything I can > fight effectively. Oh yeah, acceptance certainly doesn't mean all-encompassing peace and embracing! > > But I like people with autism. I like their honesty. I like their odd > intelligence. I like their unusual point of view. I think they are fun. I > married a spectrum person (THAT I do not recommend) and I have two spectrum > kids. > I married a spectrum person too. In all honesty, I can't reccommend that either, although Marc and I are rather well suited to one another and he does not have the blaming tendancies Lou has, nor has he ever raised a hand to me. But he is very, very difficult to communicate with at times, and living with two spectrum men and noone else, quite often I feel utterly alone. Of course, many would say I'm on spectrum too, so I imagine we are one quirky little family. We don't have many friends, that's for certain! :-P (and the ones we do have, we are passionately devoted to, and vice versa) > And I think some people are bothered by any acceptance of autism. They want > it eradicated. Maurice writes about her daughter that she will > drag her kicking and screaming out of autism (can't remember the exact > quote, but that is the gist of it) and I don't feel that way, really. I > want my children to be happy, self-supporting, and to be able to use their > talents. They are welcome to be autistic if they can manage happiness and > independence. Their talents are autistic talents, on the whole, so for all > I know the less autistic they got, the less talented they would be. He, he. You summed up my feelings exactly! Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Salli, I have missed you and your point of view that is, as stated, so eloquently stated. > I am aware that some of what I write may make some listmates feel the same > way that I used to feel. > But I didn't want those people with bright autistic kids to stop writing! > They gave me hope. I constantly tried to remember that Putter's outcome > might not be good and that he might not ever talk, but I loved the hopeful > tales and I rejoiced (while envying; it is possible) in hearing about their > progress. I have worried about this, too, but I do take hope from other people's stories that my son will be as well-adapted as theirs. And I delight in sharing his silliness with the rest of you. > I mean, I hate many aspects of autism. The stares of the ignorant, the > frustrating times, the obsessions that are stronger than anything I can > fight effectively. > > But I like people with autism. I like their honesty. I like their odd > intelligence. I like their unusual point of view. I think they are fun. I > married a spectrum person (THAT I do not recommend) and I have two spectrum > kids. I do so agree with you, Salli. The world could be better if many of us would adopt some of their traits: honesty, delight in simple things, and the great funny things they say. >I want my children to be happy, self-supporting, and to be able to use their > talents. They are welcome to be autistic if they can manage happiness and > independence. Their talents are autistic talents, on the whole, so for all > I know the less autistic they got, the less talented they would be. He, he. > I agree. I don't wish for Brandt to be a homeless, maladjusted person with no practical skills, but it's okay with me if he can take care of himself and be happy, whatever he does for a livelihood. Sometimes, I think he'll be some kind of scientist, and other times I think he might be a tripped-out computer programmer in a cubicle somewhere, and still other times, I think he might be an actor or comedian. Whatever floats his boat..... I'm just terribly thrilled that after 6 miscarriages and years of infertility, I got the honor of adopting this little light of my life. Leggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 That one seems simple... He either thought, if the autistic child was younger, that she didn't get it right the first time....and if the autistic child was older, then she obviously had too much to handle and didn't care for the older child. Penny >>>>>> So I'm wondering how he could fit those mothers into his theories, the mothers who already had " well-adjusted " children that they had " bonded " with. That part of it all confounds me. Any thoughts? Jacquie <<<<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 > They also taught him to brush his teeth with chocolate pudding, I remember that. What an incredibly stupid thing that was. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 > > I found on the Me-List and some of the other ABA lists that some of > the parents seemed to hate autism in a way that I don't really. > > I mean, I hate many aspects of autism. The stares of the ignorant, > the frustrating times, the obsessions that are stronger than > anything I can fight effectively. > > But I like people with autism. I like their honesty. I like their odd > intelligence. I like their unusual point of view. I think they are fun. >> You know, Salli, I sit on both sides of this one. I, too, really enjoy the little quirks that make people with autism so unique...and I don't " hate " anything about 's challenges (who is terribly close to spectrum...probably NLD)...I see him as an interesting, intellectual individual who may take more time to move into the adult world, and who will have to find a place that suits his strengths while adapting to his weaknesses...but he will be fine...maybe a bit " odd " to others, but he will find his niche. I worked with many, many adults with autism over the years, and " fun " is a word that always comes to mind when I think of them...wonderful, unusual view of things and even more unusual way of telling others about them... > And I think some people are bothered by any acceptance of autism. They want > it eradicated. Maurice writes about her daughter that she will > drag her kicking and screaming out of autism (can't remember the exact > quote, but that is the gist of it) and I don't feel that way, really.>> I don't really think it is a problem with acceptance with me...I understand that, barring some miracle cure, we will be dealing with this forever with ...but I understand this perspective in parents with severely involved children (like ). Autism is ' entire world...he is only now beginning to be able to allow others into it after YEARS of therapy...he is so far from anything resembling okay in terms of caring for himself, having relationships outside a very small group, or even communicating that I am truly frightened for his future...I can't bear to think of him locked up in some institution, at the mercy of whoever they happen to hire...and I have seen first hand what happens to profoundly disabled, nonverbal people who are aggressive when under the care of someone without proper understanding and training...this is what I stay awake thinking about. I don't want that to be his life, and I would pull him out of autism in a flash if it were an option. If I could " cure " ' autism, I would do it. Period. I would be thrilled if he was no longer autistic...because he isn't going to be one of those cute, quirky adults...he is going to be one of those people no one knows how to take care of or understands...and I'm not going to live forever to take care of him. What I am not willing to do? Drag him to 40,000 doctors for 100,000 tests to find out " what's wrong " ...make his life into nothing but enduring one treatment after another, with him never being able to be " okay " ...destroy the rest of my family to focus on him alone...try therapies that are so risky that his life might be in danger...fight autism so hard that it impacts how I relate to him or becomes the only thing in my world... I look at it as a problem to be solved...something I need to understand and help him make his way through...but I do realize that he is simply who he is...and that autism is part of that person. Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Yeah, I remember that too... I have to agree. I've heard A LOT of stupid things, but whoever thought of that should, well....not work in Occupational Therapy anymore! Penny Re: Did anybody see it? > They also taught him to brush his teeth with chocolate pudding, I remember that. What an incredibly stupid thing that was. Jacquie Quote Link to comment Share on other sites More sharing options...
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